Unrelated PMR question, but asking for a desperate friend in need …

[LemonZest11]

A friend of mine is bewildered about what is going on with his wife’s health. He doesn’t know where to go from here, so I told him I would ask for help from you. She has recovered from breast and throat/neck cancer, unrelated to each other, but has undergone chemo/radio and now has the all clear. Recently her B12 levels have increased to 770. Hepatology, haematology and oncology have all said, “nothing to see here”. He is so concerned for her. “Someone” has suggested it could be adrenal related post cancer treatment, but they can’t get any further answers. Would anyone here know where they could go from here? Coming to this community and team of experts because it’s all I can do to help. 🙏

[PMRpro Ambassador]

Although it is high, it isn't into the concern realms which are above 900 and a study that is relevant (B12 as a risk factor for a solid cancer) that I found used 1000 as the cut off between normal and elevated.

This paper

casereports.bmj.com/content...

may also be relevant - a percentage of the population is known to form immune complexes between B12-vitamin binding proteins and immunoglobulins in the blood and this results in an apparently raised B12 level according to lab assays but a lot of it is inactive and unavailable for utilisation by the body so can in fact even result in a B12 deficiency.

All the relevant departments have declared nothing they can find so I think he has to sit back and wait to see if it continues to rise. If she is post cancer therapy I imagine she is being monitored ongoing and they will look again if it rises further. And if they remain immoveable in their opinion that there is nothing to see - perhaps he could ask if my potential solution could be the case.

[LemonZest11 in reply to PMRpro]

You are brilliant, as always, thank you so much for this PMRpro. I’m sending this information through to my friend now. Thanks a million, as always. Xx

[PMRpro Ambassador in reply to LemonZest11]

And do tell him I know it is easy for me to say but you can't live life on tenterhooks for the big C coming back. Been there, done that. You have to live each day as it comes and be thankful for each day. Live each day as if it were your last - but the first of the rest of your life and get the most out of it. We had 26 years - bit hard at times but on the whole, lots of people have it worse.

[LemonZest11 in reply to PMRpro]

Yep. I know but I might wait until he sees yet another “nothing to see” specialist tomorrow, before I remind him of that. But you are correct, as always, and I thank you so much for your kindness pro. I’ve sent through your response and link to the paper, so hopefully that gives him something to think about. Heading over your way in 10 days!!!!!

[PMRpro Ambassador in reply to LemonZest11]

Where to? Hope the weather bucks up!!!

[LemonZest11 in reply to PMRpro]

Athens et al. Corfu. And then a little island hop. 4 weeks, can't wait!

[Nightingales]

Different labs may have different values but. “A normal level of vitamin B12 in your bloodstream is generally between 190 and 950 picograms per milliliter (pg/mL).”

Sorry, I couldn’t get the ref to paste but it was from Web MD.

I know that high Vit B12 is linked to cancer but as this is still within normal limits that may be why the docs are not concerned. Could it be that now she is feeling better she is absorbing it from her diet more efficiently? Hopefully, they will keep an eye on it and other cancer indications. Sorry your friends have been through so much .

[LemonZest11 in reply to Nightingales]

So reassuring, thank you for replying. As with PMRpro’s notes, I’m forwarding your comments to my friend. I appreciate your help xx

[Pippah45]

Have they read Kate Gilbert's great little book. I think it's a great place to start

[PMRpro Ambassador in reply to Pippah45]

I don't think the question relates to PMR per se so not sure Kate's book is relevant.

[LemonZest11 in reply to Pippah45]

Thanks Pippah45, but she doesn't have PMR.

[Pippah45 in reply to LemonZest11]

Sorry I hadn't read your post properly - I hope she finds help.

[LemonZest11 in reply to Pippah45]

Thank you.